Yoga Video Session for Pudendal Neuralgia

[jon]

I've not tried this yet, but there are some remarkable comments from people who were helped by doing these simple exercises.

https://m.youtube.com/watch?v=3A7qIM6qknw

[Violet M]

If you have a true nerve entrapment you have to be careful with any type of exercise or stretching because if the nerve can't glide normally, it can really flare up your pain and damage the nerve further. At least that's how it was for me until I had the nerve released.

Violet

[Satprem]

https://www.youtube.com/watch?v=SdQJg-HwsMQ

[matthewscott]

Thanks for sharing these resources. It’s helpful to hear different experiences, especially since exercises and stretching may affect people differently depending on the underlying issue. I agree that it’s important to research the condition carefully and discuss any new exercise program with a qualified healthcare professional before trying it.

[eraser]

If you have a true nerve entrapment you have to be careful with any type of exercise or stretching because if the nerve can't glide normally, it can really flare up your pain and damage the nerve further. At least that's how it was for me until I had the nerve released.

Violet

I completely agree and I am yet to see any robust evidence that even in the absence of entrapment that this is effective in any case. Personally, I think physiotherapy is a way of gaslighting people.

[Violet M]

Personally, I think physiotherapy is a way of gaslighting people.

Eraser, are you thinking this in relation to pudendal neuralgia? I've had some good results with PT for shoulder issues but not PN, and I don't know of very many people who had good results from PT for pudendal neuralgia, but that is anecdotal.

I could only find one article in pubmed on the topic. https://pubmed.ncbi.nlm.nih.gov/39552618/
The conclusion was that pelvic floor physical therapy was minimally effective but sometimes harmful in the treatment of pudendal neuralgia. An interesting note in the article is that for people who did experience improvement, the mean number of sessions before improvement was 5 sessions. That sort of coincides with what one PN physician told one of my friends -- that you would know within 6-12 sessions if it's going to help.
My experience with pelvic floor PT was that it caused significant flare-ups so I quit it pretty quickly.

Violet

[eraser]

Hi Violet, yes I was thinking of PN. I think for musculoskeletal problems it probably has some value. I find it interesting that it is still recommended for PN despite the lack of evidence.

I think this paragraph sums it very nicely: -

"Despite the absence of studies, the working group recommends physiotherapy for the management of patients with
PNE associated with myofascial syndromes of the levator ani and/or the lateral rotator group (piriformis and obtura-
tor internus) at clinical examination. Techniques aimed at promoting muscle relaxation should be favoured (Level V).
Endocavital manoeuvres are recommended, especially in the event of hypertonia of the levator ani muscles (Level V)."
Source: https://doi.org/10.1002/ejp.1861

As you said, I think any potential benefit would be established very early on but I have read of people trying it for months and months without success.

[Violet M]

I have read of people trying it for months and months without success.

So have I.

That is a fascinating article. There are some well-known names from the PNE world attached to it. I know this is on a different topic but I couldn't help but notice in the article the section on psychotherapy. They actually recommend cognitive behavior (CBT) for PN in some patients. Somewhere along the way in my PN treatment journey I had a provider recommend some CBT exercises to get my mind off the symptoms. I found it to be a complete waste of time. It seems to me that only someone who has never experienced the symptoms we do would recommend something like that -- but I guess I could be wrong.

Violet

[eraser]

Yeah, I like it because it covers a lot of different options in one article.

I don't really understand why they recommend it either. I think the problem with chronic pain management in general as that they recommend a number of interventions generally but unfortunately very few have proven benefit or are disease specific. To me, it is simply gaslighting but I know some people do not share this view.

I was also offered psychotherapy, which even the practitioner recognised was inappropriate as I hadn't even had surgery at that point. I started to look into the evidence base underpinning it and it's very weak to point that I am shocked that the UK even offers it. I agree, I don't know how they think that PN symptoms could be reduced by distraction. Unfortunately, I feel that psychologically is being inappropriately applied and sold on the guise of "neuroscience" when actually, it is anything but science. What I found very interesting was that it was basically a knee jerk reaction to the opioid crisis and sadly my experience has been that chronic pain is simply ignored and unmanaged. Whilst opioids may not be the solution to chronic pain, ignoring it isn't easier.

Dr Bollens was the first doctor that actually seemed to want to offer actual treatment and do something about it.

[Violet M]

What I found very interesting was that it was basically a knee jerk reaction to the opioid crisis and sadly my experience has been that chronic pain is simply ignored and unmanaged. Whilst opioids may not be the solution to chronic pain, ignoring it isn't easier.

Dr Bollens was the first doctor that actually seemed to want to offer actual treatment and do something about it.

I agree opioids aren't the long-term solution to chronic pain but they sure helped me get through a very rough time in my life. I understand they aren't the answer for everyone, especially since some people become addicted, but I was careful to only take them at night, so I wouldn't develop an addiction or tolerance, but at least I could get a little sleep and get away from the terrible symptoms for a short time. It's sad that people who really need them have such a difficult time getting them now.

I am grateful that we have doctors like Dr. Bollens and all of the others on our website listing who are willing to treat patients like us -- we aren't an easy bunch to treat.

Violet